Saturday, June 28, 2014

Epilepsy Testing

Myself, fully hooked up and ready to begin testing for the week!

    I apologize for not writing for so long but we have had our share of medical issues lately. My seizures (Check out the Epilepsy Awareness Area for the background information) have been steadily getting worse. Around the time I stopped breastfeeding Xavier my seizures started giving me problems. Since I was not on my usual medicines due to the fact I was breastfeeding we assumed I just needed to get back on my old medicines and things would be fine.
       After a visit to my doctor and going back on my normal medicine, reducing stress in our lives and trying to really get some sleep and exercise they continued to get worse. After six months of trying all this we went back to my doctor who referred me to a new Neurologist where we live. (My other one had left). He was wonderful and assured me he did not think it was anything to worry too much about, but that I should have some epileptic tests done to make sure nothing has gotten worse or changed. We agreed to go to UNC Chapel Hill. (Sorry, DUKE fans, we went there last time and had a bad experience).
      We went for a consultation with the head of the Epilepsy Program and she was wonderful and very helpful. I do not know if you know this but if you have never been to a Neurologist, they are usually brilliant, but do not have the best people skills. However, all the Neurologists at UNC Chapel Hill were fantastic. They discussed with us the possibility that it could be very bad news, of course medium news or very good news. However, in order to find out I would have to do a 3-7 day hospital stay of continuous Video EEG monitoring.
      Most people who have never experienced seizures probably have no idea what this is. However, it is certainly NOT a restful visit in a hospital where they draw some blood and run a couple tests here and there. What they actually do is hook you up to at least 25 electrodes glued onto your head and put in a net or wrapped up. Then you are hooked to a heart monitor and IV. Also, due to the fact that I sometimes have fall seizures (no warning) I had to stay in the hospital bed 24 hours a day and had to push a button to get a nurse take me to the bathroom and watch me to make sure I did not have a seizure. You are unable to bathe only by giving yourself a sponge bath in the same bed. If you try to sneak out of your bed an alarm goes off. The reason for all this protection is because they try to provoke as many seizures from you as possible. They want you to have seizures safely in their environment. They hook you up to the continuous brain wave monitoring along with video and audio monitoring of my entire room. Pretty much if I or anyone in my room picked their nose you would see and hear it. Though it is mainly focused on me.
       I do not know a lot of ways to provoke my seizures so I was subject to many tests. I checked in Sunday and was hooked up in my bed. I was in good spirits as I have done this test before, just never for as many days. Then, on Monday they decided to drop me off all my medications in hopes of provoking a seizure. They still gave me shots and other medicines as well to help things along.
They were able to get a mild seizure out of me, but mostly made me very sick and "out of it" is the best way I can describe it.
         Tuesday, they had me hyperventilate and used strobe lights so they could provoke another seizure out of me which they got a big one that day and I certainly gave them a run for their money. After Tuesday's seizure, I was so sick I was throwing up and exhausted they let me sleep a little only to then tell me to stay up until 4AM! My usual bedtime is 11pm or 12am. I think that was the worst.

This is myself Tuesday after two seizures and staying up for the third. Notice they had to redo my wires and head wrap as I knocked it all off! 

            I was so sick from the earlier seizure, throwing up and exhausted, and had to try to stay in bed all night long while being awake. Needless to say everything finally got to me and I had a bad seizure around 2:30am, yet I still was not allowed to go to sleep until 4am.
      They figured out what they were looking for so by Wednesday morning my Neurologist came in and told me I had the best option possible for these types of tests. I have a different type of seizure than was previously thought. Although it is still a long process to fix by taking new medicines and doing new treatments it can be very treatable so that I may not have them as often or at all. So we are very happy with the news, but know it will take a long road to full recovery and we are alright with that.
      I still have a long road of doctor visits, treatment plans, and medicine trials, but I am recuperating from my hospital visit now and know that I am at least in good hands and have received the best treatment possible. Many things are constantly changing with medicine. I had not checked my seizures in four years and many advances have been made in that time. Be sure to always talk to your doctor about your conditions and always consider reevaluating your health plan you may just be surprised like we were!
      One of the hardest things was this was my first time being without Xavier. I have never been away from him for longer than a few hours. So three whole days away from him broke my heart. As "out of it" and sick as I was I missed his kisses and laughter, his arms around my neck and our playtime together. I missed lying in my husbands arms and being held by him. One day he came in to kiss me and we even set the bed alarm off. Xavier was able to visit me, but he only came Monday morning when I was feeling well, since I was so sick the other days I did not want him to see me like that. The first time Nick brought him into the room to see me, I did not get my usual smile as I think the sight of me and everything I was hooked up to was scary to him. He did sit with me a little and made it through a twenty minute visit and as much as it hurt me to say it I told Nick to take him away. I did not want him bored or sad while I was there. Better they have a fun day together than we all be miserable in the hospital.
        When I got out of the hospital there was nothing better than getting good news and having Xavier run up to me and throw his arms around my neck and kiss me. We had some amazing friends who made sure I had fun pajamas, books, magazines, flowers and who called and text in with me everyday. They helped with our pets, watching our home while we were gone, some brought meals, some gave us gas cards. Others offered new toys for Xavier and of course help watching Xavier when needed. I mention these things not only because we have amazing family and friends, but also because if you know someone who is ill these are great ways to help.
      My posts may be only once in a while for a little bit, just know that I have no intentions of not writing in fact just the opposite. I have plans to fix myself up and be better than ever! That has been my motto to help me get through this "Find the problem, fix it, and be better than ever!" I just kept repeating that to myself. We found the problem, and I am now able to work on fixing it. Thanks for your love, support and patience. I appreciate it more than any of you will ever know!

Myself, after 24 hours of being home! Ready to work on the Fix It Phase!

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